Best Interests decision-making
Who decides and how?
Prof Lynne Turner-Stokes RRU, Northwick Park Hospital
Department of Palliative Care, Policy and Rehabilitation
King’s College London
The North West London Hospitals NHS Trust
The Problem
Patients who lack mental capacity to decide for themselves
– Are treated on the basis of their ‘best interests’ (BI)
There may be widely differing views
– On where those best interests lie
Families and clinical teams
– May come into conflict
In their attempts to do what is right for the patient
The Mental Capacity Act 2005 (England and Wales)
– Sets out the legal framework for BI Decision-making
in patients > 16 years
– Came into force April 2007
Still working out how to implement it
RCP Guidelines
Prolonged Disorders of Consciousness
– Published December 2013
Highlighted a poor understanding of the MCA
– Amongst clinicians and public
Objectives
– Reminder of the MCA and its provisions
Responsibility of clinicians
– Practical advice for clinicians at the coal face
Ethical and medico-legal issues
Describes the Mental Capacity Act 2005
– Provisions to support patients
Who lack capacity to make decisions about their care
– Key roles in decision-making
Lasting Power of Attorney, Welfare Deputy
Advance Decisions to Refuse Treatment
Procedures to establish Best Interests
Ethical Challenges
– Decisions regarding life-sustaining treatments
When it may be appropriate to consider
– Application to the Court for withdrawal of
– Clinically Assisted Nutrition and Hydration (CANH)
Considering ceiling of care
In patients with VS/MCS
– Life sustaining treatment is given in early stages
Against the hope/expectation of recovery
– When diagnosed as in permanent VS/MCS
Recovery from that state is deemed highly improbable
Appropriate to consider – Whether further treatment is in the patient’s best interests
Decisions regarding ceiling of care
– DNACPR decisions (Do Not Attempt Cardiopulmonary Resuscitation)
– Responsibilities of clinicians
Provides advice on informing families at the appropriate time
Normalising discussion about DNACPR
– And other life-sustaining treatments (eg antibiotics etc)
End of life issues
Withdrawal of CANH
– Operational procedures for application to the Court
Who should apply
How to go about it
Care of the dying patient
– After withdrawal of CANH
Detailed palliative care regimens
– Appropriate use and escalation of sedation / analgesia
The Mental Capacity Act
2005
The MCA 2005 introduces
Statutory principles
– For making decisions on behalf of patients
Lacking the capacity to decide for themselves
– Weighing up best interests
Balance of benefits and harms
The two-stage test for mental capacity
Provisions to support decision-making
– Allow the individual to influence decisions made on their behalf
In the event that they might lose capacity
Who decides what?
Doctors decide what treatment options are available
– A patient (who has mental capacity) can decide
whether to accept this or not
– Before losing capacity:
People can plan ahead:
– Advance Decision to Refuse Treatment (ADRT)
– Lasting Power of Attorney – Heath & Welfare
– Or after losing capacity
The Court can appoint a Welfare Deputy
– To make decisions on behalf of a patient
– For people who have no intimate support network
An Independent Mental Capacity Advocate (IMCA)
If none of the above are applicable:
– Responsibility for BI Decision-making
Ultimately lies with the senior clinician on the treating team ( ie consultant)
Futile treatments Grounds for with-holding/withdrawing treatment
– ‘Futile’ medical care
– A medical intervention that does not lead to improvement in the patient’s
prognosis
Comfort, well-being
general state of health
All treatments can cause harm
– Futile treatment has no benefits
A patient or their family
– Cannot demand treatment that is not on offer.. They cannot force a doctor to deliver treatment
for which the harms outweigh the benefits
Court of Protection can decide
– ‘It would not be unlawful to with-hold’ a certain treatment – especially if ‘futile’ Grounds for futility may be challenged in Court
Two-part test of capacity
The diagnostic test
– Is there an impairment of the mind or brain?
Or a disturbance in the functioning of it?
The functional test
– If so, does the impairment make the person unable to
Understand information relevant to the decision
Retain that information
Use or weigh it up to make a decision
Communicate that decision ( by any means)
– Failure on any one of these criteria
Means that the person lacks capacity
Advance Decision to Refuse Treatment
If an ADRT is in place
– And is valid and applicable for the decision at hand
This trumps everything else
– (Except withdrawal of artificial nutrition and hydration)
If no ADRT:
– BI decision-making regarding care and treatment
the responsibility of the senior clinician
– When determining best interests
Must take account of the views of
– Anyone engaged in caring for the person
Or interested in his/her welfare
– And the reasonably ascertainable views of the patient
Health and Welfare LPA
Someone who has capacity
– Can appoint one or more LPA
To make decisions on about their H&W
– When the person no longer has capacity
– Restrictions on an LPA’s authority
Cannot override a valid and applicable ADRT
Does extend to giving/refusing treatment
– May authorise giving refusing consent to life-saving treatment
But only if LPA document explicitly says so
– If a Welfare LPA has been appointed
They must be involved in decisions about care and treatment
Court-appointed Welfare Deputy
Appointed by the Court of Protection
– After the person loses capacity
To make treatment decisions
– In respect of which the person lacks capacity
– Welfare Deputy’s authority is restricted
Extent of their powers delineated by the Court on appointment
May relate to just a single treatment decision
– Or a wider range of treatment and welfare issues
A deputy can never refuse consent
– To carrying out/continuing life sustaining treatment
Deputy and Decision-making
If a Welfare Deputy has been appointed
– To make decisions on behalf of the patient
– It is the Deputy who decides
not the treating team
– So long as it complies with the terms of their appointment
The treating team
– Should ask to see a copy of the order
To confirm the scope of the Deputy’s authority
Deputy’s powers extend to deciding whether to accept
– Treatment considered by the treating team to be an option
The Deputy does not decide what the options are
Independent Mental Capacity Advocate
If a person >16 lacks capacity
– And does not have appropriate family / friends
To advocate on their behalf
– Has a right to an IMCA for certain decisions eg
Accommodation
Serious medical treatments
IMCA’s role
– Gathers information from all parties
What is known about the persons prior wishes / beliefs
Views of people involved in caring for the patient
Prepares an independent report – Must be taken in to account in BI decision-making
– (Turn-around time – 1-3 days)
Legal execution
Disputes under the MCA
– Adjudicated by the Court of Protection
Judges in the Court of Protection
– Empowered to make best interests decisions
And to declare that a proposed course of action
– by a health professional will be lawful
Office of the Public Guardian
– Administrative arm of the Court of Protection
The Official Solicitor
– Appointed to represent the person lacking capacity
As their ’Litigation Friend’ in Court
Practical application for the clinician at the coal-face
Key features of MCA
Mental capacity judged on each decision
– Formal consideration and documentation
Assumed to have capacity unless shown not to
Must be supported to be involved in decision
– So far as they are able
Patient who lacks capacity
– Treated on the basis of Best Interests
Balance of benefits and harms
– Taking into account what the patient would have wanted
So far as this can be established
– Only the family/friends can give insight into this
Based on their previous beliefs and values
Role of family
The role
– The family is best placed to know patient
Prior beliefs and values
– What they might have wanted if they could say
– The question to them is:
In your opinion would he/she want to accept
– The proffered treatment?
Not in the role:
– To indicate what they want for the patient
– Cannot demand treatment that is not on offer
Next of Kin (NoK)
People often assume
– ‘Next of Kin’ has deciding powers
No such concept in law
– NoK is simply a convenient route for communication
In health and social settings only
When determining best interests
– NoK has no more deciding power
Than any other family members
– Must hear the views
of any family / close friends who want to be involved
Must ask the family
Technically difficult
– Asking their opinion about
what the pt would have wanted
– Not what they want for the patient
Families often misunderstand this
– Feel they are being asked to make the decision
Or sometimes want to make the decision
Key decisions
To give a certain treatment (eg operation)
– Weigh up balance sheet
Benefits vs harms
To withdraw / withhold treatment
– Can be more emotive
Especially when life-sustaining treatment or eg
– Cardiopulmonary resuscitation (DNACPR)
– If the decision involves withdrawal of artificial nutrition
and hydration
Must always be referred the Court of Protection
DNACPR decisions
CPR can be harmful – Fractured ribs, damage to internal organs
– Hypoxic brain damage
Outcomes – following in-patient cardiac arrest
– 15-20% survive to discharge
– 3-7% return to previous functional capacity
– In severely brain injured patients – highly likely to lead to
Worse brain damage
Prolonged ITU stay
Prolonged CPR attempts almost always contra-indicated – Ceiling of care decisions are appropriate
On the other hand…
Calling the CPR team
– May be the only way to get rapid help
Blocked tracheostomy tube
Transient arrythmia
DNACPR sends a message to on-call teams
– Not for active medical care
Short resuscitation procedures may be appropriate
– But prolonged support ( eg ITU ventilation etc.) is not
Can make explicit instruction for this
GMC guidelines on End of life care
DNACPR decisions in patients who lack capacity
– Must be discussed with the family
Problems
– Ceiling of care established early during admission
– Seems like ‘giving up’ on the patient
– Family often already highly distressed
Clinicians reluctant to add to their burden
– Take the easy way out – do not complete DNACPR form
Exposing the patient to treatment
– against their best interests
Recommendations Find out if any of the following is in place
– An ADRT,
– A health & welfare LPA
– A Welfare deputy
If yes - ask to see documentation
– To clarify the scope of their powers
If not – identify key family members
– ‘Family’ in the broad sense
Important others – people involved in their recovery
Not confined to genetic or legal relationships
Normalise discussion
– Routinely hold formal Best Interests meetings
At an early stage in admission
Inviting all ‘family’ members
Best interests meetings
Explain lines of responsibility for BI decision-making
– Make clear what the role of the family is
– Leaflet available http://www.rcplondon.ac.uk/sites/default/files/information_for_families_about_medical_decisions_0.pdf
http://www.rcplondon.ac.uk/sites/default/files/annex_4b_role_of_family_and_friends_in_medical_decision
s.pdf
Explain treatments that are on offer
– Eg antibiotics, symptom relief, supporting care etc
– Discuss whether, in their view, the patient would want these
Explain why CPR is not on offer
– Balance of benefits and harms
Document meetings / decision-making process carefully
– Including all views from different members of family (especially if conflicting)
– Seek second opinion if contentious
Summary so far..
The MCA
– Provides a useful framework for BI decision making
– Not fool-proof
If we cannot come up with the right answers
– The law is unlikely to help
– Certain questions must be addressed through the Courts
Best approach
– Open and honest discussion with Family
Introduce BI concepts early on and maintain dialogue
– Patients families will normally get there eventually
– May require some time and patience
Withdrawal of CANH
Artificial nutrition and hydration (ANH)
– Seen as medical treatment
GMC – clinically-assisted nutrition and hydration (CANH)
Can be withdrawn – if futile
– But will inevitably lead to death
Within 2-3 weeks
Bland case – Hillsborough disaster
– Vegetative state – totally unaware
No positive state against which to count benefits – Balance sheet is not applicable - all negative
– ‘Would not be unlawful to discontinue ANH’
Anomalies in the Law
Since the case of Bland 1994
– Withdrawal of CANH in cases of permanent VS
Requires an application to the Court of Protection
If diagnosis of PVS is verified – further treatment is considered futile
– Not in the patient’s best interests to continue life sustaining treatment
There have now been over 50 cases – all approved
– Arguably, if the diagnosis can be verified
The Court procedure adds little benefit but causes long delay (mean 9 months)
Unacceptable delay – effectively assault
Family distress
Huge cost to the NHS – circa £122,000 per case (Formby et al 2015) – £53,000 legal costs
– £69,000 care costs
Fast Track CoP Application
CoP Practice direction 9e - application for CANH withdrawal
Working group convened - To work with CoP Rules committee
– Develop a fast track process for application
– For CANH withdrawal in undisputed cases of Permanent VS
Would still need to go before a judge
– But could at least avoid a full hearing
– Quicker
Reduced legal costs
Alleviates family distress
– Reserve Court time for more complex cases
Fast Track Criteria
Undisputed applications
– All parties agreed on
Diagnosis of Permanent VS
Best interests
– taking into account the patient’s own likely wishes
Completed full expert PDOC assessment
– including at least 2 standardised tools
– over appropriate time scale
Independent expert in agreement (Official Solicitor)
Established application form
– set of supporting documentation
Guidelines generally helpful
Many recent court cases have relied on them
Open to misinterpretation
– Some judges have mis-quoted the guidelines
Then becomes law!
– Confusion about to whom they should apply
Permanent VS is an entity of profound brain injury
– Not for end-stage dementia or other degenerative conditions
– Who is responsible for bringing the application?
Should be the CCG – ultimate responsibility for the patient
Recent case brought by a Trust
– Dropped once the patient no longer the Trust’s responsibility
GDG will be reconvened shortly
– To provide further clarification and more specific guidance
Questions and discussion